Acceptability of screening for celiac disease at Youth Health Care Centers in The Netherlands

A novel evaluation of the acceptability of screening and mass screening for celiac disease (CD) in young children at the Preventive Youth Health Care Centres (YHCCs) in the Netherlands. Children aged 1-4 years attending the YHCC Kennemerland region were screened for CD-related symptoms. Symptomatic children were offered a point-of-care (POC) test for CD antibodies. Parents of both symptomatic and asymptomatic children received tailored questionnaires assessing opinions on case finding and mass screening and about distress and anxiety. Parents of POC-positive children received follow-up questionnaires during diagnosis. Questionnaires were completed for 1070 asymptomatic children, 1095 symptomatic participants, and 653 symptomatic non-participants. Sixty-one children tested POC-positive; 39 follow-up questionnaires were returned. Reported distress and anxiety were mild, mainly after a positive POC result. Among parents who refused testing, 32% (80/248) cited practical obstacles. Of those who accepted, 88% would participate again in the future. Overall, 87% considered mass screening a good idea, but only 68% (2125/3111) would allow participation of their asymptomatic child.Conclusion: Active case finding and mass screening for CD is well accepted in the Dutch population, with limited distress for parents and children. Reducing practical barriers is essential for successful implementation.